Loud and Clear: A Special Needs Conversation

Community-Based Residences Make Social and Economic Sense

The availability of community-based housing is enormously important for individuals with disabilities. Living in natural home settings and interacting with the wider community provide opportunities for personal growth, independence, and the building of self-esteem.

For more than 20 years, I have served on the board of directors of Clearbrook, a social service agency that supports more than 30 group homes throughout northern Illinois, each of which serves eight or fewer individuals, most serving fewer than six.

When you begin the process of opening a new home, there are invariably apprehensive neighbors. We invite them to discuss safety, traffic, property values, and other concerns they may have. We show a video that features interviews with others, like themselves, who were initially nervous about potential changes that a group home could bring. They talk about how their preconceptions dissipated as they built friendships with their new neighbors – shared barbecues, holiday parties, daily chats. And they explain how much it means to them that their children are growing up alongside people with disabilities so that stereotypes can be squelched.

In my state of Illinois, there are currently more than 22,000 people waiting for openings in our limited number of community-based homes. That situation is mirrored throughout the nation. In Illinois, a bias towards institutionalization persists, despite its social and economic disadvantages. It costs approximately $55,000 per person annually to provide group home services in contrast to in excess of $165,000 per year in state-run institutions.

Despite the savings that could be realized by focusing on community-based living, the current economic climate is making matters worse. I’ve seen smaller group home provider agencies forced to close due to recent changes in Medicaid reimbursement policies. Further, proposed Medicaid cuts at both the state and federal levels are likely to “shut out” thousands seeking to build self-directed lives in their communities.

12 responses to “Community-Based Residences Make Social and Economic Sense”

I agree completely! It makes economic sense to include people with intellectual and developmental disabilities in their communities and it changes the societal perception, when people with I/DD become neighbors, store patrons, employees and active community members. Thanks for a nicely written piece, Brian. I hope Illinois can come closer to the national average of 3 or fewer individuals living together in the community.

Hello, Need help for 29-year-old son caught in county line dispute. We live 3 miles over the county line into York County but just less than the same to nearby Cumberland County where my son works. Dauphin County could also be a possibility for him as he rides the CAT transit bus. What other options are there for him other than the group homes here and would he have help. He receives SSI. Also looking for legal help to plan my estate.

Click on the link below for a list of SNA member attorneys who practice in Pennsylvania. All SNA members have years of experience in special needs law, including a comprehensive understanding of benefits and estate planning. They work closely with community organizations that serve individuals with special needs and their families and understand the sorts of issues you are facing. Many of them have families members with disabilities and so have personal experience navigating support services.

hi, thank you for your valuable information. I am looking for help to set up financial planing for my son who is 20 years old now. I have not apply ssi or medical insurance, i did not get any help from any kind of government resource yet. Though out all these years, we have been using our own medical insurance and money to support my son’s needs. I am living in NJ, can anyone help me with any kind of informations? I just bought a survivorship life insurance just to secure that when we both no longer here, there is financial support for him. Is this a good idea?

I do not practice in New Jersey, but a number of Special Needs Alliance members do. You can see the list at http://specialneedsalliance.org/locate-an-attorney/?state=NJ and select someone close to you. I recommend you talk to them about your plans; this is exactly the sort of family situation SNA members love to help with.

In the meantime, your brief sketch of facts raises a couple of ideas for you to consider. It sounds to me like your son is likely eligible for SSI. You would need to be able to show that he has a condition which prevents him from working (the term Social Security uses is “substantial gainful activity”). If he qualifies, he would receive at least about $450/month, which could help provide things you have a hard time providing out of your own funds. It would also qualify him for Medicaid eligibility, though it sounds like keeping him on your own insurance is a perfectly good option (and would mean no disruption in providers or care).

The “second-to-die” life insurance policy is a common planning device for parents of a child with a disability. It likely makes sense, but it is critically important that you set up a special needs trust to receive the life insurance proceeds. Simply naming him as beneficiary is a dangerous approach.

You should talk to a Special Needs Alliance member in New Jersey. In the meantime, keep doing the good work you’re doing, and best of luck.

I want to say that I am really touched by your kindness. Even though that we don’t know each other, but you are so kind to take your time to reply me with a lot of helpful informations. I came here from China almost 20 years ago, it was very difficult to battle the world of autistic with very few knowledge of the system here. Your point about the trust is very helpful. I just bought the survivorship life insurance today. I am planing to set up irrevocable trust soon and use it as the policy owner (I am the owner right now), also make the SNT( not set up yet) as one of the beneficiary, and my daughter is the other beneficiary, one million for each. I was told by my insurance agent that I can do the trust later on and modify into the policy without problem, at least this is what I understand. Can you verify with me if this is a good approach? My 2nd question is, I have been paying my two kids every year to help with my office work, and I put $5000 every year into their roth IRA account, dose this money disqualify my son for applying SSI? I have learned that he can only have $2000 in his account in order to qualify for SSI. Sorry for writing you such long questions. I understand that your time is precious, It is totally fine if you can not find time to answer my questions. My email is jennyli0318@yahoo.com. Thank you again for your help!

You have described a pretty complicated earnings history and planning scenario. You really should get individual legal advice; questions on a public blog are not a substitute for meeting with a lawyer who is familiar with local laws and practices.

That said, yes a Roth IRA in your child’s name could be an available resource (which would make him ineligible for SSI because it is more than $2,000). Earnings from working for you could be an indication that your son is not disabled for government benefit purposes — “disability” is defined as the inability to work, and he is in fact working.

Please go visit an attorney and give her or him all the information regarding your son. It really does sound like you have a complicated legal situation to deal with. It is not too late to create the special needs trust to receive your life insurance benefits, but there is no benefit to delay.

Thank you for your advice. You are absolutely right. I do think that I need consult with a lawyer who is specialized in disability. I was referred to one of the lawyer in my area. After the first time consultation, she told me that she can help me with trust related issues, but she suggested me that I need look for another lawyer for SSI related issue. I wonder if I can find a lawyer who can does both. Or do lawyers all work in very specialized areas?

Members of the Special Needs Alliance will be able to help you with the trust planning and the effect of the trust on SSI, as well as the benefits flowing from SSI eligibility. Most Alliance members do not actively make SSI/disability applications or pursue appeals when those applications are denied; that is another specialized practice area. You might talk to SNA members in New Jersey to see if one of them is experienced in the SSI application process; I don’t happen to know if any are.